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Copyright B 2018 Wolters Kluwer Health, Inc. All rights reserved.

Elaine Wittenberg, PhD


Betty Ferrell, PhD, MA, RN, FAAN, FPCN, CHPN
Marianna Koczywas, MD
Catherine Del Ferraro, MSN, Ed, PHN, RN, CCRP
Nora H. Ruel, MA
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Pilot Study of a Communication Coaching


Telephone Intervention for Lung
Cancer Caregivers
K E Y W O R D S Background: Family caregivers are a key communication source for nurses, and
Cancer there is a need to provide communication skill building for caregivers. Objective:
Coaching A pilot study was conducted to determine feasibility and use of a communication
Communication coaching telephone intervention aimed at improving caregiver confidence in
Family caregiver communication and reducing psychological distress. Methods: A printed
Lung cancer communication guide for caregivers and a 1-time communication coaching call
delivered by a research nurse were provided to caregivers. Recruitment and attrition,
implementation and content of coaching calls, caregiver outcomes, and satisfaction
with intervention were analyzed. Results: Twenty caregivers were recruited across
4 cohortsVdiagnosis, treatment, survivorship, and end of lifeVwith recruitment
greater than 70%. Caregiver calls averaged 37minutes, and most caregivers reported
communication challenges with family members. Caregiver action plans revealed
a need to develop communication skills to ask for help and share information.
Caregivers reported satisfaction with the print guide, and 90% of caregivers followed
through with their action plan, with 80% reporting that the action plan worked.
Caregiver confidence in communication with healthcare providers was improved,
except for caregivers of cancer survivors. Conclusions: Recruitment and attrition
rates demonstrate feasibility of the intervention. Caregivers reported that the
communication coaching telephone intervention was considered valuable and they

Author Affiliations: Divisions of Nursing Research and Education The authors have no conflicts of interest to disclose.
(Drs Wittenberg and Ferrell and Ms Del Ferraro), Medical Oncology (Dr Correspondence: Elaine Wittenberg, PhD, Division of Nursing Research
Koczywas), and Biostatistics (Ms Ruel), City of Hope National Medical Center, and Education, City of Hope National Medical Center, 1500 E Duarte Rd,
Duarte, California. Duarte, CA 91010 (ewittenberg@coh.org).
Research reported in this publication was supported by the National Cancer Accepted for publication June 7, 2017.
Institute of the National Institutes of Health under award number DOI: 10.1097/NCC.0000000000000535
P30CA33572. The content is solely the responsibility of the authors and does
not necessarily represent the official views of the National Institutes of Health.

506 n Cancer Nursing , Vol. 41, No. 6, 2018


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were able to implement a communication action plan with others. Implications for
Practice: Lessons were learned about intervention content, namely, that nurses can
help caregivers learn communication strategies for asking for help, sharing cancer
information, and initiating self-care.

C
urrently, interventions for family caregivers do not spe- because communication is 1 way caregivers manage interper-
sonal challenges, especially in communicating emotions.9
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cifically target communication skill building to support


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the caregiver"s communication role and improve care- Using this framework, we designed a nurse-delivered com-
giver confidence in communication with patient, family, and munication coaching telephone intervention to provide knowl-
healthcare providers. However, interventions with communica- edge and skill building to help caregivers develop positive appraisals
tion skill training have shown to be an option with good results. of caregivers through preparedness and to strengthen the coping
A recent study found that a family-oriented communication process by improving communication with patient, family, and
skill training program for older adults reduced depression, anx- healthcare providers. The caregiver"s communication skills may
iety, and stress.1 Developing the confidence of caregivers to be an intervening variable that explains the relationship between
communicate with others about cancer is a key caregiving skill,2 2 variables of the stress process leading to better outcomes.
and interventions to develop caregiver communication skills
are needed.
Although telephone coaching is not novel in cancer inter-
vention research, most interventions have been based on prob- n Methods
lems identified by researchers rather than tailored to the unique
needs of patients.3 In addition, coaching interventions have The pilot study was conducted at a comprehensive cancer center
been primarily offered to patients with cancer and cancer sur- in the western United States. The study was approved by the
vivors and have not included family caregivers. There is a vital cancer center"s institutional review board (#15359), and written
need for lung cancer caregivers, in particular, to develop confi- consent was obtained.
dence in communication because they report feeling responsible
for the psychological well-being of the patient4 and attempt to
protect the patient and maintain hope by avoiding discussions
Intervention
about the diagnosis and illness trajectory.5 The desire to protect The intervention consisted of a print copy of A Communication
each other results in topic avoidance between caregiver and Guide for Caregivers10 and a nurse-delivered communication
patient, impacting communication with other family members coaching telephone call. The guide has 4 sections for caregiver
and healthcare providers. In the absence of open communica- communication with the patient, local family, family who are
tion, caregiver depression results from low-quality relationships far away, and healthcare providers. Each section identifies com-
among family members, a lack of emotion from the patient, munication challenges, example language, questions for reflec-
and greater conflict.6 Communication constraints can be a barrier tion, questions to ask providers, and ways to share information
to quality care7 and potentially influence caregiver distress. This with others. Development of the guide has been described else-
study explored the feasibility and use of a nurse-delivered com- where,11 and Table 1 shows the table of contents. The guide is
munication coaching telephone intervention specifically designed written at the sixth grade level and meets health literacy standards.
to improve caregiver confidence in communication and reduce Caregivers have previously reported that content is relatable,
psychological distress by supporting caregivers in their commu- useful, and easy to read. Healthcare providers have also rated the
nication about cancer with others. material as easy to understand and use for patients/family mem-
bers of diverse backgrounds and varying levels of literacy.
Although coaching interventions are typically conducted
Theoretical Framework longitudinally, a 1-time call was initially tested in this pilot study
The Cancer Family Caregiver Experience8 framework outlines to confirm caregiver acceptance of communication skill build-
context, primary stressors, appraisal of caregiving, and second- ing and because telephone-based coaching is an effective format
ary stressors as antecedents of caregivers and patients" health for caregiver interventions that ensures flexibility and adaptabil-
and well-being. The framework depicts that family caregivers ity.12 Table 2 shows an overview of the content of the inter-
manage caregiving within a family system, which influences vention coaching call. The research nurse attended a 2-day
secondary stressors (family communication patterns about ill- communication training course to develop communication
ness that reveal role changes, changes in family structure, life- coaching skills, which included instruction on family caregiver
style changes as a result of illness) and shapes their cognitive/ communication characteristics, active listening skills, and how
behavioral responses (communication apprehension), ultimately the nurse can use open-ended questions to meet the caregiver"s
impacting both caregiver and patient health and well-being. communication style. The principal investigator of the study
Previous research on caregiver stress and coping has determined also met with the research nurse weekly to discuss study protocol,
that communication is a central part of the stress process model provide feedback on coaching calls, and review data.

Communication Coaching for Caregivers Cancer NursingA, Vol. 41, No. 6, 2018 n 507

Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved.


are made, such as social work services, pastoral counseling,
Table 1 & Overview of Contents for A
and psychological treatment.15 The distress thermometer has a
Communication Guide for Caregivers
sensitivity of ! =.87 and a specificity of ! =.72 for detecting
Table of Contents clinical levels of distress.14,16
Section 1& Communication with the patient The caregiver confidence in communication survey was de-
How do I take care of someone with cancer? veloped by the research team for this study to measure caregivers"
What should I care with the patient/family member? confidence communicating with patient, family members, and
What if we don"t agree? healthcare providers across 4 specific topic areas (cancer diag-
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Section 2& Communication with other family member nosis, cancer treatment and goal of treatment, symptom manage-
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Who is family? ment including managing pain and adverse effects, and broader
How do I talk about cancer with my family? life topics such as spirituality and stress from caregiving). Care-
Why is talking about cancer difficult? givers rated their communication confidence using a Likert scale
How can my family help me? rating from 0 (‘‘not confident’’) to 10 (‘‘very confident’’).
Section3& Communication with family members who are far away
Finally, the research nurse conducted a brief telephone inter-
What is it like to be a family member far away?
What does the cancer journey look like?
view with the caregiver regarding intervention satisfaction at
Section 4& Communication with healthcare providers 1month. Caregivers were asked to report how satisfied they were
What do healthcare providers need from me? with the printed guide, how prepared they felt to carry out their
What can I ask a healthcare provider? action plan, whether they carried out the action plan, and
What if I can"t do what is asked? whether the action plan worked.

Data Analysis
Participants
Transcripts from the coaching calls and satisfaction interviews
Eligibility criteria included 18years or older, English speaking, were analyzed using content analysis, and demographic data
and being a primary family caregiver as identified by the patient were summarized. The Wilcoxon rank sum test was used to
with lung cancer. Five caregivers were recruited in each cohort compare baseline and postintervention metrics for each cohort.
based on the cancer care continuum: cohort 1, diagnosis (patient
diagnosis was received within the last 45days but had not yet
started treatment); cohort 2, treatment (patient started initial n Results
treatment within the last 30days with prognosis of more than
1year); cohort 3, survivorship (patient had completed treatment Recruitment and Attrition
and was clinically disease free at the time of caregiver enrol-
ment); and cohort 4, end of life (patient was estimated to have Thirty-two caregivers were approached, and 72% of the eligible
6months or less to live). caregivers consented (n=23). Six caregivers declined study par-
ticipation because of lack of interest, two reported that they were
too busy, and one declined because of health reasons. Three
Intervention Implementation
Patients receiving outpatient care were screened by the oncol- Table 2 & Communication Coaching Telephone
ogist and research nurse to identify potential caregivers in each Intervention
cohort. Cohort eligibility was confirmed via medical records and
Question
oncologist consultation. Eligible caregivers were approached in
the clinic, and written consent was obtained. Caregivers who Who is the most challenging to talk to about cancer?
received the intervention were given a copy of the guide upon Probe: patient, family members, or healthcare providers
consent and participated in a communication coaching call sched- What is most challenging for you to talk about?
uled 1week from study consent. Communication coaching calls Probe: what barriers keep you from communicating better?
were audio-recorded and transcribed. Probe: what is happening that makes communication difficult?
When you think about having to talk about cancer and you
know it will be challenging, how does this impact you?
Caregiver Outcomes Probe: physically? Psychologically? Socially? Spiritually?
Let"s review the guide and select a strategy that may work in this
All caregivers completed baseline and follow-up measures of situation or select an exercise.
psychological distress and caregiver confidence in communi- Let"s develop a personal action plan for you to improve the
cation by telephone 1month after the coaching call. The psy- communication you have described as challenging.
chological distress thermometer is an efficient tool to evaluate Let"s role-play the potential solution to the communication
caregiver distress for the past week, based on a scale of 0 to 10, challenge we have been talking about.
and is included in the National Comprehensive Cancer Network Finally, I"d like to briefly identify other pages in the guide that
Psychological Distress guidelines.13 A score of 5 or higher in- may be useful to you.
dicates a need for intervention,14 and appropriate support referrals

508 n Cancer Nursing , Vol. 41, No. 6, 2018


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caregivers were lost to attrition across cohorts because of lack often detailed the caregiver"s self-described inability to commu-
of interest (cohort 4, end of life), nonresponse (cohort 3, nicate with providers caused by nervousness, a desire to avoid
survivorship), and declining patient health (cohort 1, diagnosis). certain conversations, daunting medical jargon, fast-paced con-
The mean age of caregivers was 56.1years. Most caregivers were versations, language barriers, and not knowing what questions
white (80%), female (70%), and college level educated (75%). to ask. When asked who was most difficult to talk with, one
Most caregivers were spouses/partners (65%). caregiver responded: ‘‘I would say probably the healthcare pro-
vider just becauseIIt"s not her, it"s me. The inability to com-
municate. I"ve always had a hard time.’’
Implementing Coaching Calls
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Patient communication challenges were less frequent in


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Communication coaching calls averaged 37minutes (range, coaching call discussions and focused almost exclusively on fear
11-85 minutes). Although all consenting caregivers completed of discussing the future and frustration with cognitive decline.
the communication coaching call, there was difficulty schedul- A caregiver from cohort 1 (newly diagnosed) shared that her
ing the calls due to caregiver availability. Overall, 8 caregivers number 1 communication challenge was ‘‘the nervousness and
completed the communication coaching within 1week from communicating about the disease and my mother and then not
consent. On average, calls took place within 2weeks. One care- wanting to go in certain directions with the conversations.’’
giver from cohort 4 (end of life) did not complete the com-
munication coaching until 54days after consent.
Only half of the caregivers participated in role-play during
Caregiver Action Plans
the call. Caregivers were reluctant to try role-playing their com- During the coaching call, caregivers worked with the research
munication challenge with the research nurse. In many cases, nurse to develop a personal action plan based on a self-identified
caregivers only wanted to talk in general about communication communication challenge. On the basis of the caregiver"s unique
approaches rather than try a new communication strategy. Care- circumstances, the research nurse identified strategies in the
givers politely avoided role-play with the nurse by explaining that communication guide to assist the caregiver in developing an
there were other people available for support, talking in general action plan for communicating with others. Caregiver action
about how to use the communication strategy, or focusing on plans varied, and there were 4 main challenges present across all
how their self-care needs were being met. The following are caregiver action plans: asking others for help or to do something
some examples: specific, sharing information about cancer with family members,
being present for the patient, and initiating self-care. Table 3
& In 1 instance, a caregiver focused on ways to be present with the
provides a summary of caregiver action plans by themes.
patient and initiated a discussion about nonverbal communi-
cation and ways she could communicate respect to the patient.
& When the nurse attempted to role-play ways to share infor- Caregiver Outcomes
mation with a child, the caregiver responded by talking in
A comparison of mean scores showed improvement in caregiver
general about the many topics to cover in the conversation.
confidence in communication across caregivers in each cohort
& After identifying the need for self-care, including a physical
except for the survivorship cohort (Table 4). Combined results
examination, the caregiver deflected an attempt to role-play by
from all 4 cohorts showed statistically significant improvement
explaining that her husband, sister, and brother-in-law support
in confidence with healthcare providers (P=.01). The average
all of her caregiving efforts.
decline in stress was 0.09 on the distress thermometer; however,
caregivers in cohort 4 (end of life) had increased stress from
Reported Challenges During Calls baseline (mean, 4.2/10) to 1-month follow-up (mean, 4.8).
Nine caregivers (45%) reported that family was the most chal-
lenging to talk to about cancer, followed by the patient (30%) Caregiver Satisfaction With Intervention
and healthcare providers (15%). Two caregivers reported no
communication problems. Family communication challenges Caregivers reported that they were very satisfied (60%) and
were embedded in previous family experiences, reflecting fears somewhat satisfied (25%) with the print guide; however, 1 care-
of loss, fear of causing stress to others, and not knowing how to giver described the guide as a painful reminder that his wife
initiate conversations or what questions to ask. A caregiver from was sick, and 2 caregivers shared that the guide was not useful
cohort 4 (end of life) explains that communication with her for them. ‘‘It was not very helpful. It"s been six years since my
siblings is difficult: wife"s diagnosis and I have done most of the things suggested
in the guide,’’ explained 1 caregiver in cohort 3 (survivorship).
Sometimes they refuse to hear or see above my mom"s On the other hand, caregivers in cohort 4 (end of life) found
illness or they don"t bother to ask. I have to take the the guide ‘‘informative, enlightening, and very helpful.’’ One
initiative and make the conversationIand I have to do it caregiver explained, ‘‘It helped me understand and accept the
one at a time. I"m not going to talk with all of my challenges ahead of me.’’ Several caregivers commented that the
brothers at the same time.
guide was easy to read, yet they found it ‘‘too simplistic’’ and
Although most caregivers did not initially identify commu- ‘‘too generalized,’’ desiring more information specific to their
nication challenges with healthcare providers, coaching calls family situation. Table 5 outlines caregiver satisfaction with the

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Table 3 & Examples of Caregiver Action Plans
Asking others
& When uncle offers to watch her child, caregiver will ask him to watch the patient so she can spend time with her child. She plans to
communicate that sitting with the patient while she ran errands with her daughter would be more helpful.
& Asking son and daughter to stay with the patient so caregiver can attend a 3-day conference
& Ask the patient to have family game night on Fridays again to stimulate family conversation and communication
& Ask doctor to slow down when communicating
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& Ask husband for help with children so she can better attend to patient"s needs
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& Ask father"s sister to help by coming on Sundays to visit with mother (patient) so caregiver can spend quality time with her husband
Sharing information
& Caregiver will share her need for help and support with daughter.
& Strategies for sharing information with stepfather regarding patient"s chemotherapy treatment
& Caregiver will tell in-laws that he believes holistic modalities are not realistic for the patient.
& Caregiver will tell sister-in-law that her brother was given a diagnosis of cancer.
Being present
& When the patient isolates herself by sitting away from family, caregiver will engage in nonverbal communication strategies to ‘‘be present’’ with
the patient.
& Recognizing when something is different with the patient
Initiating and reinforcing self-care
& Continue to improve and maintain her self-care needs
& Schedule a doctor"s appointment for routine examination
& Realization that yearly physical examination has not been conducted
& Caregiver realizes during call that she has been crying alone and needs to talk about stress of caregiving

intervention by cohort. Caregivers from all cohorts reported were reluctant to participate in role-play during the call. Care-
feeling generally prepared, and 90% of the caregivers followed giver discomfort with role-playing a scenario with the nurse indi-
through with their action plan, with 80% reporting that the cates that intervention content may need revision, such as focusing
action plan worked. ‘‘I have better tools in my toolboxI. I feel more on reviewing communication skills in the print guide.
confident,’’ shared 1 caregiver. Although role-play activities have been shown to be an ef-
fective teaching tool for communication skill building in health-
care provider training,18Y20 this study suggests that role-play
n Discussion may not be an appropriate communication skill building activity
for caregivers. A future trial would need to consider ways to
This is the first study to evaluate the feasibility of a commu- discuss what the caregiver might say rather than attempting a
nication coaching telephone intervention developed for family formal role-play with the nurse. Scheduling coaching calls with
caregivers of patients with lung cancer using a tailored approach caregivers also proved to be challenging, with a 1-week expected
that allows caregivers to identify communication challenges. time frame from consent to scheduled call difficult for caregivers
Recruitment in an outpatient cancer care clinic was successful, to achieve. This pilot study demonstrates that 2weeks is more
and the enrolled-to-consent rate of caregivers was similar to appropriate. Providing availability of the guide in digital format
other nurse-led intervention research,17 averaging more than may also increase the flexibility of the intervention study design.
70%. Recruitment with the support of the oncologist was In line with patient with lung cancer and caregiver preferences
effective and needs to be considered for a larger trial. for intervention delivery, the telephone intervention was ac-
There are several implications for intervention delivery in ceptable.21 As more and more supportive care is being de-
a future randomized controlled trial. For example, caregivers livered to caregivers by telephone and caregivers also desire more

Table 4 & Summary of Mean Scores by Cancer Care Continuum


Diagnosis Treatment Survivorship End of Life
Base FU Base FU Base FU Base FU
Caregiver confidence communicating witha:
Patient 7.7 8.6 7.7 8.6 9.3 9.2 8.1 7.2
Family 7.8 8.9 7.2 8.0 8.7 8.6 7.6 7.9
Healthcare provider 7.1 9.5 8.3 9.2 9.0 8.0 7.8 8.8
Psychological distressb 5.6 2.8 4.2 3.6 2.4 1.6 4.2 4.8

Abbreviations: Base, baseline; FU, follow-up.


a
Scale of 0 (‘‘not confident’’) to 10 (‘‘very confident’’).
b
Scale of 0 to 10, with 5 or more indicating a need for intervention.

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Table 5 & Caregiver Satisfaction With Intervention
Cohort 1, Cohort 2, Cohort 3, Cohort 4, End
Diagnosis (N = 5) Treatment (N = 5) Survivorship (N = 5) of Life (N = 5)
Satisfaction with printed guide, n (%)
Very satisfied 4 (80) 4 (80) 1 (20) 3 (60)
Somewhat satisfied 1 (20) 0 3 (60) 1 (20)
Neutral 0 0 1 (20) 1 (20)
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Somewhat dissatisfied 0 1 (20) 0 0


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How prepared, n (%)


Very prepared 3 (60) 3 (60) 4 (80) 4 (80)
Somewhat prepared 2 (40) 1 (20) 1 (20) 1 (20)
Neutral 0 1 (20) 0 0
Follow-through with action plan, n (%)
Yes 5 (100) 5 (100) 4 (80) 4 (80)
No 1 (20) 1 (20)
Did action plan work, n (%)
Yes 5 (100) 3 (60) 4 (80) 4 (80)
No 0 0 1 (20) 1 (20)

support by telephone, there is a need for both clinicians and research on caregiver communication skill and ability and
research personnel to develop better telephone skills to improve impact on quality of life are warranted.
interactions with caregivers. A recent qualitative study with patients with lung cancer and
Similar to other lung cancer caregiving research,4,22 this pilot caregivers revealed a desire for educational interventions that
study found that common communication challenges experi- focus on adverse effects and the provision of various coping
enced by caregivers occur with family members. Caregivers skills.21 Similarly, in a palliative care intervention study for
predominantly identified family as the most challenging to talk lung cancer caregivers, which had a significantly positive impact
to about cancer, and their action plans centered on commu- on caregiver quality of life, symptom management strategies
nication skills with family members. Overall, there was less were a top priority across the 4 educational sessions of the quality-
importance placed on caregiver-patient communication during of-life intervention.26 Findings in this pilot study suggest that
coaching calls and within action plans, suggesting that future caregiver education should include attention to communi-
communication interventions should concentrate on caregiver cation skills to combine both knowledge needs for symptom
skills with providers and/or family members. management and communication skills to aid in coping with
This study highlights 4 key areas for communication skill symptom management responsibilities. It has been surmised
development for lung cancer caregivers. First, caregivers need to that coaching builds confidence by reinforcing the participants"
learn effective ways to ask for help from others in a manner that efficacy expectation, and confidence in communication can
makes them feel comfortable. Information and healthcare ser- therefore be improved by creating an awareness of one"s own
vices remain among the top unmet supportive care needs of lung communication approach and style.27 This may account for the
cancer caregivers, and healthcare service needs are associated disparity between the content of the action plans developed by
with caregivers" fatigue.23 Second, caregivers need tools for how caregivers, which centered on family communication, and out-
to share information with others about the patient’s cancer. come results showing improved caregiver confidence with health-
The ability and willingness to share information about cancer care providers about the patient"s treatment and adverse effects.
have been shown to improve the patient"s quality of life24 and The tailored intervention approach, which allowed caregivers
may have a similar effect on caregivers. Future research should to self-identify a communication challenge for the coaching
explore the impact of information sharing on caregivers because call, suggests that these skills are applicable to others. Further
recent research has found that complicated grief symptoms are research is required to formally evaluate the impact of caregiver
higher among families with family members who had difficulty communication coaching on communication in clinical visits
accepting the illness.7 For example, the use of communication with providers and patient outcomes.
facilitators (trained nurses and social workers) to support com- Recruitment strategies developed for future work should
munication between clinicians and families in the intensive target caregivers of patients who are newly given a diagnosis,
care unit has been shown to reduce family distress.25 Third, undergoing treatment, or at the end of life. Although there is
caregivers need to learn how to be present for the patient by a need to improve patient-centered communication between
recognizing specific nonverbal behaviors that can indicate poor healthcare providers and cancer survivors,28 this intervention
psychological well-being. Fourth, caregivers need encourage- did not result in improved caregiver confidence in communi-
ment to recognize and initiate self-care. Action plans developed cation for caregivers of cancer survivors. Still, the 1-time com-
by caregivers in this study demonstrated that talking about munication skill development session with a research nurse
caregiving prompted thinking about self-care needs. More resulted in a communication action plan that could be carried

Communication Coaching for Caregivers Cancer NursingA, Vol. 41, No. 6, 2018 n 511

Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved.


out by the caregiver. Furthermore, distress may be the wrong 7. Kramer BJ, Kavanaugh M, Trentham-Dietz A, Walsh M, Yonker JA.
outcome variable to assess study effectiveness. Complicated grief symptoms in caregivers of persons with lung cancer:
the role of family conflict, intrapsychic strains, and hospice utilization.
This study was limited by the use of a small and select Omega. 2010;62(3):201Y220.
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